Undiagnosed question

Hi, I'm waiting for a pmr diagnosis. I have the classic symptoms and of course have read the websites.

I'm trying to work out if I could be susceptible to giant cell too. I've been getting headaches and a sort of pressure pain behind my ear? Also can you fly? I'd call my doctor but he is on a local holiday today and it does not seem important enough to call the bag helpline. I hope someone can reassure me. Many thanks


6 Replies

  • Most people who have had GCA with headache as a presenting symptom say it is like no headache they've had before - but headache only appears as the main complaint for less than half of patients. Be sure you know the other things - jaw pain when chewing that goes when you stop, scalp pain for example. And if you have any visual symptoms at all - call your emergency services if you haven't got someone to take you to the ER. That could be double vision, dark spots in your visual field, feeling as if there is a curtain across your eye and other things I can't think of off the top of my head! Then you need urgent care - within hours preferably.

    Can you fly? When? Now or later? Lots of us do fly, it's maybe not as good an idea when waiting for a GCA diagnosis, or at the very beginning of treatment for GCA when you are on high dose pred and things are still a bit up and down. But I've flown to S Korea and China while on pred, others have done shorter flights with no problems.

  • That's all very useful. Thank you for your kind response.

  • Hiya,

    You say you are waiting for PMR diagnosis. How long have you had 'symptoms', and has GP ruled out other options, or is this the first stab at a diagnosis? Are you on any medication whilst you're waiting confirmation?

    I had undiagnosed PMR for a good fifteen months before the tell-tale GCA symptoms started in earnest, so unless you've had your symptoms for some considerable time, then I doubt its GCA. It could be, but usually it comes on if you have been undiagnosed for a long time, or the Pred is not sufficient to control the inflammation.

    You can fly with it, but you need to inform your travel insurance company beforehand.

    When you go away, presuming you are on Pred, then make sure you take plenty with you, flying is stressful, so will not help your PMR symptoms.

    Hope this helps.

  • Hi thank you that's really helpful. I've had symptoms for about 3months. Various blood tests done but nothing conclusive. Not on any meds yet but thinking of asking for some soon. Thanks again.

  • Unfortunately, it can take a long time for a definitive PMR diagnosis. Seems like it is a diagnosis of excluding all else. Going thru that right now, trying to rule out RA. I recently had a temporal biopsy for GCA. Luckily it was negative. It can be a very serious condition that can render one blind. The headaches, temporal tenderness, jaw pain, even fever can be a symptom of GCA. Please do not ignore this as it could be an emergency! I would also recommend the FB group Polymyalgia Rheumatica. It has about almost 2200 members and is a great source of information about that and GCA. Good luck.

  • That's super thanks. I had looked on fb but was looking for the wrong thing. I hope you get your diagnosis soon so it can get some treatment, and you can feel a bit better. I popped back to the doc today, different doc he thinks it's muscular and I should go for physio. Perhaps that will help but I'm not convinced. 😊

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